Factors that Underpin the Delivery of Effective Decision-making Support for People with Cognitive Disability

Abstract

Over one million Australians have some form of cognitive impairment due to intellectual disability or acquired brain injury and require significant levels of support for decision-making. To date, the range and quality of support available has been poor, often tending toward undue paternalism, with deleterious consequences for the individual's sense of identity and quality of life. Efforts to rectify this situation have recently been championed by law reform commissions, which have focused on establishing new legal structures for support with decision-making. However, the crucial issue of how decision-making support is delivered in practice – in terms of quality and effectiveness – remains in urgent need of attention. The aim of this article is to describe four empirically based propositions that characterise effective decision-making support; orchestration by the primary supporter; commitment to person; support principles; and a repertoire of strategies that can be used flexibly depending on the type and context of particular decisions. These propositions are based on evidence from a series of qualitative studies conducted by the authors. Results of these studies enabled the identification of factors that underpin delivery of effective support and can be utilised to develop capacity-building education programs for people providing decision-making support to those with cognitive disability, either intellectual disability or acquired brain injury, which will substantially improve the quality of support given.

Keywords:

• decision-making
• human rights
• cognitive disability
• supported decision-making

Acknowledgements

The authors thank Professor Terry Carney for his helpful advice on the development of this article.

This is a revised version of a paper delivered at the 8th Annual Roundtable on Intellectual Disability Policy, “Supporting People with Cognitive Disability with Decision-making: Learnings from recent Australian research and international experiences”, La Trobe University, 10 December 2014.